I am Carol in Maryland. I have been twitching since Thursday, 9/12/02. My husband (Steve) and I were sitting in our living room that evening watching TV. I had just taken a shower and sat in the recliner for a relaxing evening. All of a sudden, ALL OF THE NERVES in my lower legs and feet began to flutter and twitch. I was scared to death as were you! I got up to walk and had a stabbing pain in my left calf and fell to the floor. Then my feet and ankles started spasming and it actually looked like something out of the Excorcist. My feet were twisting around involuntarily and the arches were spasming. It was horrible! I didn't know whether to go to the emergency room or what! I called my parents too. Since my MD isn't very accessible (he isn't in on Fridays or Mondays) we called a friend of ours who is the best chiropractor in our area. He said to come right over in the a.m. I did, he examined me, and I had an MRI of the brain all within that morning, Friday the 13th of all days. The diagnostician at the MRI Center showed me the films and spots on my brain. He said he couldn't tell me if it was or wasn't MS -- that's what I was thinking at the time. Also, prior to this attack I had a dull headache everyday for two months that didn't respond to Advil or Aleve. I reported this to my MD at a prior visit and he never took me seriously. Plus, I had been having trouble with my eyes since May. They became very, very red and inflamed so much so that I had to quit wearing my contacts. Well the correlation of these three symptoms = MS. I have an acquaintance who has MS and I called her. This is exactly how her MS started, twitching, headaches, eye problems! I just became unglued. My chiro's office tried to get me into a neurology clinic in Virginia but there was a month wait. I finally got an appt at WVU in Morgantown but it was 2 weeks away!! I couldn't get in anyplace locally for at least a month. In the meantime my mom talked me into going to the emergency room to see if I could at least get my foot in the door with a doctor. Well, we sat there one evening for about 4 hours with all the goons coughing and hacking. I saw a really nice dr. He said that I needed to see a neuro within the next day or two. He gave me a list of names. There was one on there I hadn't called so I tried him the next day. I got an appt the very next day! He spent an hour and half with me, did EMG test, etc. all normal. At that point in time he was calling it radiculopathy due to a lower back problem and gave me Neuronton to take. I was somewhat satisfied with that but then I thought, wait a minute, why am I twitching above the waste if this is a lower back problem? So I kept taking the Neuronton and when I went back 2 weeks later, I reminded him about the headaches and eye irritation. Well, typical...when they don't know, they prescribe and that's what he did. He tried to give me every migraine pill, anti-anxiety pill that was made. I kept saying no. no. no. I left there disgusted and the hell of it is, I'm still making payments. This was in October. When I got a copy of his notes for another appt, he had me listed as having ______. (Some word that starts with an "S" that means a disorder brought on by getting medical info and then imagining that you have the symptoms.) When I read that, I could have exploded I was so mad. I went to my appt at WVU and saw a young neuro who was so full of himself it was disgusting. He looked at my MRI, or should say glanced, made a flippant remark about chiropractors, did a brief neuro exam and said, well, you don't have MS and that was the end of it. He didn't offer any further testing or anything. And I paid $450 for that. I was going on zero to two hours of sleep a night because I was so distraught and trying to work at my job as a secretary with a plastic smile on my face each day. Somewhere along the line, I saw my husband's doctor too and he gave me a prescrip for Effexor an anti-depressant! He said the twitching was stress! Also, whilst running to all these other doctors, I am going to eye doctors trying to find out what is causing the pain and irritation in my eyes that had been going on since May. Eventually, I did see another neuro in our town who diagnosed BFS. When I went for my first visit, I started out by saying: Doctor, My test results do not support anything I am about to say, so please don't think I have lost my mind. I then proceeded to tell him about the twitching, etc. He was very receptive and understanding. After three months, I finally got the diagnosis of BFS. The white spots on my brain were NOT indicative of MS, but are call unidentified white spots which 7 out of 10 people have. I finally got a diagnosis for my eye problem that 3 MD's, 3 Neurologists, 2 optometrists and the top opthalmologist in our town couldn't diagnose: I have occular rosacea which is in no way connected to BFS. I got my diagnosis at the Eye Clinic at WVU and was treated for 8 weeks with doxycycline. As for the headaches I had two months prior to the twitching...I just believe that was part of the onset of BFS. In the meantime, my husband has a nervous breakdown and develops agoraphobia with panic disorder so I haven't burdened him with my BFS, etc. That's a whole 'nother story in itself! Add 2+2 and get four. Medical bills and husband off on medical leave. The added financial stress does aggravate the twitching but I'm coping! Maybe I could have a bake sale.
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Twitching Since 9/12/02 in MD
- Thread starter syvagrams
- Start date
JCVanilla4125
Well-known member
This whole thread reminds of a "twilight zone" episode; where everyone is feaked out and starts fighting with each other about who was right and who was wrong and who did or didn't do what they should have.
There is no point attacking Alonzo; he spends countless hours on this board trying to reassure people who are freaked out every day about what is going on with them. He does this for no pay and on his own time in addition to having his own life!
Whether this person or that person has this information or that information regarding BFS, no one has all the information. If they did we wouldn't be here. Even the neurologists have different opinons. That doesn't make any of them more right or more wrong.
The important thing is that the information on this board be consistent with the current knowledge on BFS, and it is! Anyone who doesn't believe that should do their own research and find out, I have. Sure, Alonzo gives his opinon on various aspects of BFS such as the cause, but when he does he lets you know that it is his opinon not fact. If people disagree with him they say so and give their opinon, that is one of the reasons why this board is here.
It is human nature to point blame when something happens that challenges your concept of order in the world; but that balme is merely a way to distance you from the event. Alonzo obviously didn't cause Carol's ALS. BFS didn't cause Carol's ALS. Carol sadly, was initially misdiagnosed. My heart goes out to her and my prayers are with her! I'm not sure what is worse, being told immediately that you have ALS, or having several months of the possibilty that you might not have it, before you find out you do. I hope that I never find out the answer to that, and I hope that none of you do either!
There is no point attacking Alonzo; he spends countless hours on this board trying to reassure people who are freaked out every day about what is going on with them. He does this for no pay and on his own time in addition to having his own life!
Whether this person or that person has this information or that information regarding BFS, no one has all the information. If they did we wouldn't be here. Even the neurologists have different opinons. That doesn't make any of them more right or more wrong.
The important thing is that the information on this board be consistent with the current knowledge on BFS, and it is! Anyone who doesn't believe that should do their own research and find out, I have. Sure, Alonzo gives his opinon on various aspects of BFS such as the cause, but when he does he lets you know that it is his opinon not fact. If people disagree with him they say so and give their opinon, that is one of the reasons why this board is here.
It is human nature to point blame when something happens that challenges your concept of order in the world; but that balme is merely a way to distance you from the event. Alonzo obviously didn't cause Carol's ALS. BFS didn't cause Carol's ALS. Carol sadly, was initially misdiagnosed. My heart goes out to her and my prayers are with her! I'm not sure what is worse, being told immediately that you have ALS, or having several months of the possibilty that you might not have it, before you find out you do. I hope that I never find out the answer to that, and I hope that none of you do either!
sbernhard1
New member
Aaron,
My simple point is that maybe all those people who got freaked out should also have been reminded about what they're freaking out about - a couple of sentences, not hard facts or medical knowledge.
I understand your need to defend your position, but if we knew all the facts, that may not even be necessary. Wait until you know what happened, then you can discuss it instead of speculating on what may or may not have happened.
People should not be taking this case and making assumptions one way or another about twitching/BFS and ALS..How can we with what we know? In my opinion that's the point that should be being made here - not that I'm right, and he's right, and facts are facts etc. etc.
And I'll stick by my comment about it being irresponsible. There are many comments here regarding Carol being misdiagnosed, having this, having that, when we have NO clue about the details.
Sometimes it's important that people that are 'freaking out' see the real problem that they have...it's not ALS...it's called health anxiety, stress, and hyponchondria. Fix this problem first by understanding what you are getting freaked out about - at this point in time very little.
Either way, this is not a normal BFS case and shouldn't be concerning most of the people here even if the worse case is true. I just think it's an inapropriate time to be bickering when we should sending our thoughts and prayers to Carol. A person says she has ALS, a disease that most people here live in fear of, and there are few words I see comforting her and asking for more details to try and learn from it...I guess I see it differently.
I'm not the boss here, and I'm done on this. Hopefully Carol can reply at some time and we'll get all the details. Until then perhaps at least some of you should hold-off on your verdicts.
The Knight
My simple point is that maybe all those people who got freaked out should also have been reminded about what they're freaking out about - a couple of sentences, not hard facts or medical knowledge.
I understand your need to defend your position, but if we knew all the facts, that may not even be necessary. Wait until you know what happened, then you can discuss it instead of speculating on what may or may not have happened.
People should not be taking this case and making assumptions one way or another about twitching/BFS and ALS..How can we with what we know? In my opinion that's the point that should be being made here - not that I'm right, and he's right, and facts are facts etc. etc.
And I'll stick by my comment about it being irresponsible. There are many comments here regarding Carol being misdiagnosed, having this, having that, when we have NO clue about the details.
Sometimes it's important that people that are 'freaking out' see the real problem that they have...it's not ALS...it's called health anxiety, stress, and hyponchondria. Fix this problem first by understanding what you are getting freaked out about - at this point in time very little.
Either way, this is not a normal BFS case and shouldn't be concerning most of the people here even if the worse case is true. I just think it's an inapropriate time to be bickering when we should sending our thoughts and prayers to Carol. A person says she has ALS, a disease that most people here live in fear of, and there are few words I see comforting her and asking for more details to try and learn from it...I guess I see it differently.
I'm not the boss here, and I'm done on this. Hopefully Carol can reply at some time and we'll get all the details. Until then perhaps at least some of you should hold-off on your verdicts.
The Knight
Well I aknowledge I was rather selfishly vitriolic and I'm sorry to those I offended. What can I say, almost five years of this myself and Carol's story still scared me a bit too... I do recognize how important Aaron is to this forum. I have no intention of becoming a regular here, either.
But, Carolmarie's story aside, what my two neuros told me doesn't quite jive with the opinions most widely held here, and it momentarily irked me that those views aren't welcome or valid, even if they come from two neuros who teach EMG at respected university hospitals, and interesting, both have had BFS on and off since med school themselves. (their views do agree on the important thing, that a clean EMG and clinical are very reassuring and strongly point away from ALS).
Regardless, the mayo study is the best thing going. Someone posted over at Braintalk (eeek!) a while back that he had a visit with one of the actual authors of the study, who said that even since they did the study they've kept track of even more BFS'ers and STILL nobody has gone on to have ALS.
But, Carolmarie's story aside, what my two neuros told me doesn't quite jive with the opinions most widely held here, and it momentarily irked me that those views aren't welcome or valid, even if they come from two neuros who teach EMG at respected university hospitals, and interesting, both have had BFS on and off since med school themselves. (their views do agree on the important thing, that a clean EMG and clinical are very reassuring and strongly point away from ALS).
Regardless, the mayo study is the best thing going. Someone posted over at Braintalk (eeek!) a while back that he had a visit with one of the actual authors of the study, who said that even since they did the study they've kept track of even more BFS'ers and STILL nobody has gone on to have ALS.
owingDuckWhistler777
Well-known member
I absolutely agree - I think we have to look at all information, including things which may not completely fit in with the majority's viewpoint.
David
David
m47Just1More4th1
Member
Dave YY,
You have me very curious as to what your Neuro's say. Can you elaborate on that? Do they feel that there is never a "magic number" of time you must wait before you are in the clear? Can you let me know? Thanks.
J
You have me very curious as to what your Neuro's say. Can you elaborate on that? Do they feel that there is never a "magic number" of time you must wait before you are in the clear? Can you let me know? Thanks.
J
you ALL have valid points, be them whole or in part. I must say that I too was a a bit off the deep end when I was for some reason or another, attacked and scolded for offering someone who at the time (early-on in the stages) showed no apparent signs to warrant any worry. How do you think a man like myself would react? I'm a big boy, both in age and size. Have always been the boss of the companies I own and have ran in the past and I don't take kindly to being scolded when it really was un-called for. But I apologize for being a bit harsh.
DaveYY, it might be good for some readers here to see what your two neuro's said. It is the "cumulative" information that adds-up to a whole. If you share your information, it might certainly help other's to understand what is and what isn't, and help form a better big picture for us.
As for me, that's how I look at it.. the WHOLE picture. Not something one doctor says here, or what another doctor says over there. A LOT of doctors have different opinions on even the smallest things that are MUCH less complicated than ALS. That's why we usually get second and third opinions before going under the knife... You have to look at the whole ball of wax and make your conclusions from there.
If we listened to one person's accounts with BFS, it would seem that stress caused it and it always starts in the calves, until we see someone else's opposition that states they were on easy street and had no stress in their life what so ever and their twitches started in the eye lid and face.
It has been talked about over and over again that magnesium and B-12 and even Klonopin relieves BFS symptoms, yet for just as many times we have heard those statements, we hear at least as many (if not from the same people changing their minds) saying that nothing changed when they tried that stuff. Hell, I had a few Long Island Ice Teas the other night and all of my symptoms went away too! I didn't notice a single twitch! so that must be a cure, or a way to aleviate the symptoms too? Hardly.
It goes on and on with exercise, sleep, etc. Again, it is the whole picture we have to look at, not what one or two doctors say here, or one guy says over there. And as one of the posters said, even the original Mayo study is still being followed for further results, and you know what? the results are STILL the same. No change, which means no reason to freak out.
And WhiteKnighter - "People should not be taking this case and making assumptions one way or another about twitching/BFS and ALS..How can we with what we know?"
That's because so many people had already freaked out over what was posted. It was too late! The damage was already done. No, we don't have all of the facts, only what she has posted, which she has in numerous other threads than the one you see in this thread, so yes, there IS more information we know, that maybe you haven't seen yet. Being that people had already freaked out over this situation, someone had to come-in and say something to to keep things in perspective and to keep these people calm and from getting worse. Maybe you don't realize just how "off the deep-end" some of these peopel get with fear. I have been there and I can tell you it is VERY easy to consider suicide over something as stupid as this, so there certainly was an urgency that I had to address. You, yourself might not have known this, but I, and several other's do. And I still get private e-mails from people that are STILL scared to death, which is OK with me. Everyone here knows that I am ALWAYS open to any e-mails, both public and private.
And as JCVanilla4125 put it. I do spend a lot of time on here, helping people any way I can to understand what we know about BFS (which ALL came from doctors from around the world) and helping them to stay calm and not get all freaked-out. I don't get paid to do this or to be on here. I run several businesses, many of which I don't disclose in my profile. Lets just say that along with what is in my profile, I am also the CEO of two other high profile companies and definately have many more things I could be doing with my spare time... spare time? What the hell is that? So obviously when someone says something bad about me or attacks me in some way, I respond. I didn't get where I am in life by being a big weenie and standing around with my finger up my butt. I am pretty well known for getting things done and taking care of people. Being that I have experienced the serious fear of the ALS scare first hand, I just want to put back what I got from this site. Trust me, I do have a million other things and places I could be at this moment, but it's good to be the boss and do whatever I want, whenever I want... and I choose to be here helping people in the same position I was once in and nearly lost my life over.
DaveYY, it might be good for some readers here to see what your two neuro's said. It is the "cumulative" information that adds-up to a whole. If you share your information, it might certainly help other's to understand what is and what isn't, and help form a better big picture for us.
As for me, that's how I look at it.. the WHOLE picture. Not something one doctor says here, or what another doctor says over there. A LOT of doctors have different opinions on even the smallest things that are MUCH less complicated than ALS. That's why we usually get second and third opinions before going under the knife... You have to look at the whole ball of wax and make your conclusions from there.
If we listened to one person's accounts with BFS, it would seem that stress caused it and it always starts in the calves, until we see someone else's opposition that states they were on easy street and had no stress in their life what so ever and their twitches started in the eye lid and face.
It has been talked about over and over again that magnesium and B-12 and even Klonopin relieves BFS symptoms, yet for just as many times we have heard those statements, we hear at least as many (if not from the same people changing their minds) saying that nothing changed when they tried that stuff. Hell, I had a few Long Island Ice Teas the other night and all of my symptoms went away too! I didn't notice a single twitch! so that must be a cure, or a way to aleviate the symptoms too? Hardly.
It goes on and on with exercise, sleep, etc. Again, it is the whole picture we have to look at, not what one or two doctors say here, or one guy says over there. And as one of the posters said, even the original Mayo study is still being followed for further results, and you know what? the results are STILL the same. No change, which means no reason to freak out.
And WhiteKnighter - "People should not be taking this case and making assumptions one way or another about twitching/BFS and ALS..How can we with what we know?"
That's because so many people had already freaked out over what was posted. It was too late! The damage was already done. No, we don't have all of the facts, only what she has posted, which she has in numerous other threads than the one you see in this thread, so yes, there IS more information we know, that maybe you haven't seen yet. Being that people had already freaked out over this situation, someone had to come-in and say something to to keep things in perspective and to keep these people calm and from getting worse. Maybe you don't realize just how "off the deep-end" some of these peopel get with fear. I have been there and I can tell you it is VERY easy to consider suicide over something as stupid as this, so there certainly was an urgency that I had to address. You, yourself might not have known this, but I, and several other's do. And I still get private e-mails from people that are STILL scared to death, which is OK with me. Everyone here knows that I am ALWAYS open to any e-mails, both public and private.
And as JCVanilla4125 put it. I do spend a lot of time on here, helping people any way I can to understand what we know about BFS (which ALL came from doctors from around the world) and helping them to stay calm and not get all freaked-out. I don't get paid to do this or to be on here. I run several businesses, many of which I don't disclose in my profile. Lets just say that along with what is in my profile, I am also the CEO of two other high profile companies and definately have many more things I could be doing with my spare time... spare time? What the hell is that? So obviously when someone says something bad about me or attacks me in some way, I respond. I didn't get where I am in life by being a big weenie and standing around with my finger up my butt. I am pretty well known for getting things done and taking care of people. Being that I have experienced the serious fear of the ALS scare first hand, I just want to put back what I got from this site. Trust me, I do have a million other things and places I could be at this moment, but it's good to be the boss and do whatever I want, whenever I want... and I choose to be here helping people in the same position I was once in and nearly lost my life over.
m47Just1More4th1
Member
Aaron,
You have helped me and I do appreciate it. I think everyone does. I just want to say, thanks. 13 months and counting...hoping for 60 years of twitching that goes nowhere - I would be 88 then (however, if it wants to stop at any time that is fine by me!!)
J
You have helped me and I do appreciate it. I think everyone does. I just want to say, thanks. 13 months and counting...hoping for 60 years of twitching that goes nowhere - I would be 88 then (however, if it wants to stop at any time that is fine by me!!)
J
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